Chrons/IBD

My DH was diagnosed with chrons last year.He was also found to have a hiatal hernia and erosions on his esophagus.His doctor told us also that his intestines were weak and paper thin.They did the whole camerad from both ends and looked at his whole digestive system.We were in the hospital for a week.The doctor gave him pain meds and more pain meds until he ended up on a mophine skin patch that left him a zombie.We stopped seeing the doctor.He never advised us on diet or anything.He doesnt want to go to more doctors and only will to persue disability.He spends lots of days in the bed and bathroom.It has totally devistated our lives.He cant work money is tight,we fight alot more beccause hes in pain and angry.He has a short string that he can deal with the kids and doesnt get to play with them the way he used to.One stray toddler foot to the tummy during rough play and hes down.I have researched some and found ideas for his diet that have helped some small amounts.I have increased his fiber alot,thats supposed to make his intestines stronger.

I just wish they knew what causes this.I know its thought to be heriditary but for us that is no help as he is adopted and little is know about his birth mother absolutly nothing about his birth father.I have heard some speculation that its to do with processed food and even alchol use.Now that he is sick everywhere I turn I find more and more people sick with these ailments.I think it needs more attention by the heath community.

I just hope that a cure is found soon.Its not a happy thought thinking of years of watching the man I love suffer.

Jenn, he absolutely must go to a new doctor if he wants to stay alive! Crohn's (NOT Chron's--if you are doing a websearch with the misspelling, you won't find much) is rarely deadly if it's treated properly, but can very easily kill if it's not. I am not saying this to be alarmist or rude; it is the plain truth. I nearly died myself earlier this year, and I was even being treated properly. Also, unless someone has specific financial or religious reasons for refusing to go to a doctor (the latter means that the patient needs some kind of certified from his or her minister saying that his or her religion forbids a doctor's treatment), Social Security and most private disability insurance policies will not even CONSIDER the claim of someone who is not going to the doctor. Again, these are the plain facts; I am not being alarmist. I am not a doctor but these things are well-known. If you still want to have a husband this time next year, he needs to go to a gastroenterologist and get on medication right now. Real IBD medication, like prednisone and Asacol, not just painkillers. Paper-thin intestines can perforate at any time, which is an emergency situation that can kill in a matter of hours. Also, soluble fiber is probably good, but insoluble fiber like nuts or fruit skin or wheat bran can be very, very dangerous for him. It can cause a blockage if he has intestinal narrowing, or it can rip his intestine and cause a perforation. Sometimes we need to go on a no-fiber diet too, like Ensure or even clear liquids. Honestly--and I am NOT giving legal advice or medical advice, just my own personal opinion--if I were in your position, I would sue that first doctor for malpractice, since he apparently refused to treat your husband, essentially.

Kelly, you really never heard of Entocort? It's been approved in the US for a couple of years now, and in Canada for longer. Fewer side effects than prednisone. I've been on it since January, though I'm tapering off it right now because Remicade is helping me to do that. 18 pills a day is nothing. I'm on 40, plus Remicade (not a pill--given by IV). Part of the reason one needs SO many pills in the case of Entocort and Asacol is that they are designed to be effective in the last part of the small intestine and the colon, as a sort of internal topical treatment (does that make any sense?) but the stomach and the top of the small intestine both dissolve part of them before they get to the place that they treat, so you need to take extra to make up for the fact that some of the medication gets "lost" along the way. Asacol is safe for most people.

Jenn, were you seeing a GI doctor or just the regular family physician? Regular primary care doctors are always so excited to talk to my husband and pick his brain about his illness and treatments because they just weren't trained like specialists, they just don't know that much. Also, there really is a lot more info every year, and a lot of support out there (sorry I led you astray with my bad spelling in the earlier post, didn't proof, like I said, listen to Becky! ) Check out the CCFA website it can lead you to support groups in your area. See a specialist Jenn. Becky is a pro, listen to Becky.

Becky, did it seem strange I didn't know anything about my husbands meds? Like I said he has been really healthy for a number of years to where I had kind of stuck my head in the ground and forgot day to day about what we were dealing with. My husband stays on top of his condition and care VERY well. But doesn't like to talk about it, doesn't seek thinks like support groups because he says he doesn't want to be reminded how sick he can get. It was really troubling to me at first and I worried a lot but we kind of have an agreement that he'll let me know when things are bad, thats how he deals with it best. And when things are really good I confess I slack off on keeping up. But I am an awesome low residue chef and keep the fridge stocked with homemade chicken broth for those liquid diet days! I'm the warm fuzzy side of the care!

Kelly

Listen to Becky!!!!

Jenn, I was also diagnosed with Crohn's a couple of months ago, and even with medication it hasn't been plain sailing. In fact Becky's help has been invaluable, because there are just so many things that doctors neglect to mention or don't think of. I was getting totally messed up on when to take my medication because I was just following the instructions on the packet, which didn't bother to mention certain pertinent facts! Getting your husband to a good specialist has to be the first step though. They miss out on stuff, but this isn't a disease that can be managed without one, especially when it's active. I ignored my problems for quite a long time, and it sure as hell didn't help the situation - I'm only just starting to feel like I've rejoined the human race after a very long time. Who knew that vitamin B12 in large doses would have an immediate impact?? They certainly don't do anything for the inflammation, but it beats living like a zombie. Only the specialist can determine what your husband really needs, because only a specialist can decide which blood tests are necessary to find out what else is affecting your husband's health. The list of 'other' things, beyond the inflammation itself, caused by this disease was absolutely mind-boggling to me - there was anaemia (more than just iron deficiency apparently!), the B12 which was absent, possible thyroid and arthriti problems... the scope of this disease is huge, well beyond what a GP is equipped to deal with.

Clearly the idiot your husband saw before was one of THOSE doctors that we all come across from time to time. Run fast in the opposite direction, but for goodness' sakes don't let this be the only chance you give it. This disease certainly doesn't have to be fatal, but if left untreated it will leave your husband unable to absorb any nutrients and he will basically starve to death, with a good deal of accompanying pain. Nobody would leave a terminal illness without asking for a second opinion, so don't let one dreadful experience scare you and your husband away from finding the right specialist. Don't let your husband curl up and waste away because of one fool. He needs the right medication. It's available, and it's starting to make a difference in my life - I started on prednisone and Asacol just under 3wks ago, along with supplements. Last week I thought maybe dying was preferable, but this week I've got the medication on schedule and things are just hugely different. I can DO things instead of looking on at the world and wishing I could just reach that piece of rubbish to put it in the trash, or whatever little task it was.

Kelly, sorry about your husband. That's one thing I can be glad about - at least it's me instead of him, though I'm sure my DH would exchange rather than watch! I can understand him not wanting to make it the centre of his life when he's in remission, so no wonder you tend to forget it's there! I look forward to being able to forget for a while!!

Kerri.

If I may be so bold as to butt in on y'alls conversation. . . I have a cousin with Crohns. I've just heard different ones talking, but know absolutely nothing about it. I'm just wondering if any of you or DH's with Crohns have considered seeing or have seen an Iridologist or Doctor of Naturopathy?

The reason I'm asking is that I recently saw an Iridologist who is a Doctor of Naturopathy and was so impressed with the results that DH and my kids both went. I'm beginning to see improvement with them now also. She made it VERY clear that this is NOT to take the place of traditional doctors. It's amazing what nutrition has to do with so many things that go on in our bodies and what an Iridologist can tell. I'm putting a link below just in case anyone is interested in checking it out. Seems like the bowels and colon, etc. are one of the things they can tell lots about.

Please understand I would never try to tell anyone with a condition like this what they should or shouldn't do. Until I saw this lady, I hadn't a clue about what Iridology even was. I thought perhaps some of you might not know either. It may not be a choice you would consider at all, but it is another avenue to explore in case one is interested. I agree with the others about finding a doctor & not trying to go it alone.

http://www.ultimatehealing.com/Iridology.htm